The health insurance debate is back in the headlines this week — if it ever really left them. Now, a new study adds more data around another group affected by access to health insurance coverage: adult survivors of childhood cancer.

The study, published Monday in the journal JAMA Internal Medicine, looked at the insurance status and health care costs of these survivors right before the Affordable Care Act was fully implemented.

Adult survivors of childhood cancer were denied health care coverage more often than their cancer-free siblings, paid more out-of-pocket for their health care, were more likely to borrow money due to health care costs and were more prone to skip filling necessary prescriptions due to their price, the study saw.

The analysis drew from the large, nationwide Childhood Cancer Survivor Study and relied on surveys of U.S. survivors conducted between 2011 and 2012. The results will serve as a benchmark for researchers studying the effects of the ACA’s rules on pre-existing conditions on this particularly vulnerable population, said Massachusetts General Hospital cancer survivorship researcher and lead author on the study Dr. Elyse Park. Those rules went into effect in 2014.

Before then, insurers were allowed to deny coverage to those with pre-existing conditions or charge them more for insurance premiums. Both practices were made illegal under the ACA.

The current study highlights the financial burden this particular population — childhood cancer survivors — faces in their adult lives and how their health insurance status affects that burden.

“The disparity in coverage is real and problematic,” Park said.

The study focused on health insurance, but for adult survivors of childhood cancers, many factors combine to form the constellation of health care cost burdens known as “financial toxicity,” said Fred Hutchinson Cancer Research Center biostatistician Dr. Wendy Leisenring, a co-author on the insurance study and lead statistician for the Childhood Cancer Survivor Study, or CCSS.

The issues “really are all intertwined,” Leisenring said.

Financial toxicity is a major problem for current cancer patients, previous research at Fred Hutch and other organizations has shown. But studies like this analysis from the CCSS are showing that the financial effects of cancer extend far beyond the cost of the initial treatment itself.

Lower income, higher costs

For the current study, the researchers collected surveys from nearly 700 childhood cancer survivors who are participants in the CCSS and were on average 31 years out from their original diagnoses. They compared them to surveys filled out by 210 siblings of childhood cancer survivors who served as a cancer-free comparison group. There wasn’t a huge difference in the number of uninsured among the two groups — slightly more than 10 percent of the survivors were uninsured as compared to slightly less than 8 percent of the siblings, which was not a statistically significant difference.

Fred Hutch biostatistician Dr. Wendy Leisenring leads the Statistical Center for the nationwide Childhood Cancer Survivors Study, which is headquartered at St. Jude Children's Research Hospital.

Photo by Bo Jungmayer / Fred Hutch News Service

But the research team found that survivors’ insurance status did differ meaningfully in a few important ways. Survivors were more likely than the sibling group to receive coverage through Medicaid or Medicare. They were also more likely to have been denied insurance coverage: Less than 2 percent of the sibling group reported being denied health insurance in the past as compared to more than 15 percent of the cancer survivors.

The researchers then drilled down into the survivors’ expenses, their access to health care and their state of mind surrounding their health. The team compared both the survivors to the siblings as well as the insured to uninsured survivors. They found that survivors’ average annual out-of-pocket expenses were about $800 more than those of the siblings: nearly $2,400 versus nearly $1,600.

This finding is even more striking when taken in the context of other research about childhood cancer survivors, Leisenring said. The current study saw that survivors’ annual household income was on average lower than that of the control group, and past research from the CCSS found that survivors are more likely to be unemployed due to their health, and when they have jobs, they are less likely to work in typically higher-paying managerial or professional positions.

“It all ties together,” Leisenring said.

That overall financial burden played out in behavioral differences the researchers saw in their study. Survivors were more likely than the sibling group to have skipped a necessary medical test or treatment, or skipped filling a prescription, because of worries about cost. They also had higher levels of worry about their medical bills and were more likely to have borrowed money to pay those bills.

Insuring the most vulnerable

Those differences were more dramatic — and more worrying to the researchers — in the group of survivors without health insurance. Nearly 60 percent of the uninsured cancer survivors reported having had a medical problem but not seeking care for it versus 22 percent of the survivors with insurance. And 46 percent of survivors without insurance had no primary care provider, as compared to only 6 percent of those with insurance.

Their study didn’t directly ask whether skipping necessary health care or medication led to worse health problems for the cancer survivors, although they are planning to address that question in a follow-up survey to the entire population of 24,000 survivor participants in the CCSS, the researchers said.

Depending on which treatment they received, childhood cancer survivors are often at higher risk of many other diseases in their adult lives, including heart disease and secondary cancers. Because of those risks, specialty groups such as the Children’s Oncology Group recommend that childhood cancer survivors get screened more often for certain conditions.

So it stands to reason that skipping medical appointments, especially preventive health care, could lead to poorer overall health for childhood cancer survivors, Leisenring said. If they develop a secondary cancer, it might not be detected until it’s more advanced, for example.

That’s why the researchers are especially interested in conducting additional studies to ask whether the ACA’s mandates for coverage and costs for those with pre-existing conditions — like a previous cancer — are mitigating some of this financial toxicity to survivors.

“There were provisions in the ACA that were meant to protect vulnerable populations like cancer survivors,” Park said, pointing not only to the rules relating to pre-existing conditions but also the mandate that parents could keep their adult children on their insurance plans until age 26. Previously, young adults who were not in school full-time were cut off from their parents’ plans at age 19.

The current study “lays a good groundwork for future studies to see how these outcomes that we’ve looked at might change over time [under the ACA] for people who are the most dependent on our health care systems,” Leisenring said.

Rachel Tompa is a former staff writer at Fred Hutchinson Cancer Research Center. She has a Ph.D. in molecular biology from the University of California, San Francisco and a certificate in science writing from the University of California, Santa Cruz. Follow her on Twitter @Rachel_Tompa.

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